Monthly Archives: July 2016

Seven Chapters In

I’ve been trying to read a book, and I’m having a lot of trouble getting through it. I’m seven chapters in after an entire month.

The problem is not time. Maybe a little, but I’m finding time to read again these days. The problem isn’t the writing. It’s well done, and I am in fact attempting to learn from that as I go along. I actually got to have dinner with the author and hear her speak, and she is a delight. I really want to like this book. I do like this book. I just don’t know if I can finish it.

It’s a memoir of the author’s first marriage, to a young man with cystic fibrosis. You can guess the ending, right?


I brought this home with me the night I met Liz and I kept intending to start it. That was months ago. Many, many months.

I’m in it now, you guys, and it is hammering me.

We have been living for a little while in a pleasant little vale, where cystic fibrosis does not matter much in our day-to-day lives. Sure, we fit in 75 minutes of treatments every day and Levi takes enough pills at breakfast to choke a baby elephant, but that’s just what we do. We’re used to it and it feels normal and on we go, whistling as we work.

This book just terrifies me.

I am terrified of the time that is going to come when Levi leaves my house and I can no longer know for sure that he is doing every possible thing to take care of himself.

I am terrified that he is going to fall in love with someone who can’t handle a diagnosis like this and his heart will be broken. I am terrified that he will fall in love with someone who can handle a diagnosis like this and he won’t need me anymore, and then what will I do? If there’s a future me that doesn’t constantly worry about Levi’s lung function and the future and whether he’s had his enzymes, I’m not sure I’ll recognize myself when I meet me. Someday he’s going to check in to the hospital and it not only won’t be my responsibility to stay with him, it won’t be my right.


Levi in 2012, during a visit to the CF center.

Most of all, I am terrified that the cure is not coming fast enough or cheaply enough or in just the right way for his gene mutation. That all the walking and cycling and fundraising will not have been enough. And this vibrant little voice will be silenced way too soon.


I just can’t stand it.

So I do not know if I can finish this book. I already know the ending, but I don’t know if I can handle the journey. I can’t decide whether this means that I know my limits or I am a sniveling coward, and I don’t want to think about the answer very hard, which is probably answer enough.

Orson Welles said a happy ending depends on where you stop the story. I think, for now, it will have to be enough that our story hasn’t ended. There is still happy in front of us.

And I can decide about chapter eight tomorrow.



Paul took the boys away to a cabin for a couple of nights over the holiday weekend. People have been asking what I’m doing with myself. Mostly cleaning and decluttering like a woman possessed. Yes, I know I should take some time to relax, but you know what really helps me relax? A clean house with clear surfaces. I mean, I think it would. I don’t really remember.

People are sometimes surprised to learn that we adopted Levi, but almost never that we adopted Elias. The exception is a very drunk Russian guy who talked to Paul on the beach in Florida while the boys were examining a gopher turtle, looked the boys over carefully, looked at Paul, and said, “Aaaaaaaaahhhh. You have two womens!” (Paul politely said no, he could just barely manage the one, thanks.)

People are further startled on occasion by how bluntly we refer to color in our family. I think* this is the right thing to do. If we never mentioned the fact that some of the people in our family are brown and some are pinkish, that would be weirder than talking about it. “I don’t see color” sounds nice if you don’t think about it very hard, but it’s a fact, and not talking about it doesn’t make it not matter. More than anything, I don’t want him to grow up thinking there’s something wrong with it. Which is what happens a lot of the time if nobody talks about stuff – it gets this weird, forbidden feel to it.

Elias is, as far as we know, a full-blooded native South American. So when Paul found a North American native powwow, he knew it wasn’t quite on point, but it’s a lot closer than a Swiss Anabaptist potluck dinner. Not that there’s anything wrong with those; the pies alone are a major draw.

What a time they had.

These kind folks are Gentle Dove and Blueeye. They led Elias through some of the dances.

I’ve heard a lot lately about how we’re all living in silos. We watch the news channel that reinforces our worldview, we talk to the neighbors who think like we do, and we don’t worry too much about the people who disagree with us because clearly they are wrong. Or stupid. At the very least, they are not like us, and getting to know them would be, well, a lot of work. Who needs it?

I wasn’t there to say it in person, but I would like to thank you, Gentle Dove and Blueeye and all the rest of you, for bothering. Thank you for inviting my boys to the dance.

Even the pinkish one.




*It’s parenting, so really, I have no idea. We’re just trundling along doing the best we can at any particular moment in time.